To crack the code of FSHD, patients are essential. Every breakthrough in FSHD has been made because patients and their family members got involved. We are hopeful that a treatment is within sight; your participation will move us closer to discovery.
FSH Muscular Dystrophy is highly variable, even among affected family members. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives, physically and mentally.
There is great power in community. Around the globe, individuals with FSHD are living proof of that. When we come together, each bringing our unique strengths to bear, we inspire each other to reach higher than we can when we go it alone.
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us.
Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).
Education is our Best Weapon for Change
FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy. Our webinars and other contents are designed to empower individuals to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide treasure troves of videos, articles, and resource lists, provided by the world's top experts, including many people living with FSHD. FSHD University is a place for you to gain knowledge, make friends, and find hope.
Latest Blog Posts
FSHD Masterclass for physicians is available on-demand
100% of doctors who took the live version said they would recommend this course to their colleagues. The FSHD Society’s highly rated CME-accredited masterclass on facioscapulohumeral muscular dystrophy (FSHD) is now available on-demand. Although FSHD is one of the most common forms of muscular dystrophy, it is often misdiagnosed and inadequately managed. This masterclass aims…
AMRA Medical cites FSHD Society’s support of its MRI study
Hats off to AMRA Medical and Avidity Biosciences for adding magnetic resonance imaging (MRI) to the landmark MOVE study. The FSHD Society helped to build and expand the clinical trial research network that makes this study possible. We’re also constantly…
Upcoming Events
Sharegiver Hour
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules...
Wellness Hour (Virtual Meeting)
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). Each month, we'll have a conversation...
FSHD University: Drug Development update
12:00 PM ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Jeffrey Statland, MD Our speaker this month is Jeffrey Statland, MD, co-director of the FSHD Clinical Trial Research Network and professor of neurology at the University of Kansas Medical Center. Dr. Statland has his finger on the pulse of all...
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. Your participation is vital to ending the suffering caused by FSH Muscular Dystrophy (FSHD). There are many ways you can get involved and play an active role.